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75 Reviews
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July 24, 2009
1 person found this review helpful

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July 24, 2009
1 person found this review helpful

The Mesothelioma Applied Research Foundation (MARF) or Meso Foundation as it is commonly known looks after the interest of patients and families that are victims of this deadly but preventable disease. As there is virtually no research funded by the government or by any other groups the available treatment arsenal hasn’t changed much over the last 30 years contrary to the progress seen in eg Breast, Colorectal, Non-Hodgkin’s lymphoma, and Multiple Myeloma to mention just a few malignant diseases that have seen the impact of newer treatment modalities. The other side of Mesothelioma is the money, due to the asbestosis litigation which makes every patient a potential gold mine for those few law firms that are selected to represent the patient. Thus, there is a lot of advertisement from respectable and less respectable trial attorneys trying to attract a potential client. For a person with a newly diagnosed deadly malignant disease, with a name you can hardly pronounce, it’s not an easy task to navigate the turbulent waters of the excessive but not always necessary information flow. No wonder patients and families feel lost and confused in a time of significant stress and chock. MARF was founded to be a non-biased support group, initially helping patients with the information flow, supporting patients who can ill afford to travel for a consultation with the few and far apart clinical experts, supporting the family in difficult times and not least trying to find money for the much needed basic and clinical research, compensating for all the lost ground that the years of neglect and ignorance has caused. The Meso Foundation has as it’s ultimate long term goal to find the tools that will cure the disease and to work with other organizations to find ways to eradicate this preventable disease. As an Oncologist, Clinical Research Physician and Scientist working within the Meso Foundation finding a way to make the public, the medical community and the “government” aware and engaged in taking on the fight against Mesothelioma and reaching out to the many patients and families that are victims of this deadly but preventable malignant disease to help and support them is a noble and important task. I call on you to help me/us in doing the same, we are long overdue with dealing with this disease and you can make the difference.

The Great!

I've personally experienced the results of this organization in...

Awarding Research Grants resulting in publications in Peer Reviewed Scientific Journals

Ways to make it better...

If I had to make changes to this organization, I would...

Just continue what it set out to do, ther is so much more we can do to take the fight to the next level.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

It's the only organization dealing with this deadly but preventable disease where Patients, Families, Attoneys and Medical Doctors come together and work for the same goal hand in hand

The kinds of staff and volunteers that I met were...

great, they had insight, understanding and were engaged in a way that made you want to be one of them

If this organization had 10 million bucks, it could...

Do mucvh more, but 10 million dollar would only pay for 2 clinical trials where we may need 20 trials to make headway.

Ways to make it better...

there were more of us!!!!!

In my opinion, the biggest challenges facing this organization are...

Public ignorance, lack of donations due to the recession and loosing advocates due to the disease taking its toll

One thing I'd also say is that...

I or you could be the next victim tomorrow so we all have an interest to see that there is an influx of resources to understand, finding and getting drugs approved to treat and cure patients with Mesothelioma

When was your last experience with this nonprofit?

2009

July 24, 2009
3 people found this review helpful

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July 24, 2009
3 people found this review helpful

My son was diagnosed with peritoneal mesothelioma 10 years ago, sadly before the Meso Foundation was established for the sole purpose of funding research to find treatment and a cure for this asbestos induced cancer. I have seen the progress over the past years in the ability of patients to fight off mesothelioma for longer and longer periods of time, all thanks to the Foundation's great generosity in funding promising research for treatment and a cure - its only mission. Please help the Meso Foundation end this disease by giving generously. It is too late for my son, but future victims will thank you.

Photos

The Great!

I've personally experienced the results of this organization in...

the survival rate of patients of this rare disease, all thanks to the dedication of passionate researchers whose work is funded by the vision and single-minded focus of the Meso Foundation.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the knowledge that researchers know who their patients are and why they are working so hard.

The kinds of staff and volunteers that I met were...

dedicated beyond measure. They know no time limits, and work with single-minded focus: to find treatment, a cure and put an end to the scourge of asbestos poisoning.

If this organization had 10 million bucks, it could...

fund highly promising research that the Meso Foundation sadly must ignore because of lack of money. 10 million bucks could get us to a cure so much faster... for the sake of current and future victims. Pleae help!

When was your last experience with this nonprofit?

2009

July 23, 2009
1 person found this review helpful

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July 23, 2009
1 person found this review helpful

I fully credit the Foundation with saving my life. I was diagnosed with peritoneal mesothelioma in August 2006, and was told by my local physicians that I should get my affairs in order. I found the Meso Foundation and they led me to a specialist, and I will be celebrating my 3 year survival anniversary soon. their work in research and advocacy in this field is unmatched. I am honored to be affiliated with them.

The Great!

I've personally experienced the results of this organization in...

every patient given hope, and in the emerging awareness surrounding mesothelioma and continuing asbestos dangers.

Ways to make it better...

If I had to make changes to this organization, I would...

do nowhere near the job Chris Hahn does. His dedication is amazing to me.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

their adaptability to current circumstances, and their ability to connect the patient, research, caretaker, and medical communities on a common front.

The kinds of staff and volunteers that I met were...

outstanding. I only wish there were a few more, as they are overwhelmed with the work they do.

If this organization had 10 million bucks, it could...

possibly find a cure for mesothelioma, and launch a major public awareness campain about the dangers of asbestos still in use.

Ways to make it better...

The foundation were bigger and had more visibility. Easier to find.

In my opinion, the biggest challenges facing this organization are...

$$$$$$$$, awareness, and the apathy of our own government officials in the fight to ban asbestos and fund meso research

One thing I'd also say is that...

the Meso Foundation is OUTSTANDING in its dedication to its cause.

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

My grandfather was diagnosed with mesothelioma in 2007. I found the Meso Foundation by accident through a Google search. I was so lucky. From day one, the Meso Foundation provided me and my family with loving support, advice on multiple treatment options for my grandfather, and a community that simply inspired our entire family. Without their outpouring of love and support (to a total stranger nonetheless), there is no way I could endured the process of trying to help my grandfather get well while caring for him the best I could in the process. The Meso Foundation is first class all the way. It's too bad this site only provides five star ranking. They truly deserve at least 100 stars!

The Great!

I've personally experienced the results of this organization in...

the lives of many people. Where there was no hope, now there is hope. Where there was only sadness, now there is a reason for joy.

Ways to make it better...

If I had to make changes to this organization, I would...

hire all the same staff that currently works there because they are second to none. I have full faith in Chris Hahan to run this organization so I have no desire to run it!

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The people. They truly care about the cause of curing mesothelioma and banning asbestos. This is not just some group of people using this nonprofit as a stepping stone like some others do.

The kinds of staff and volunteers that I met were...

the most caring and giving people I have ever met. They took time for me whenever I needed it night or day no matter where they were in the world.

If this organization had 10 million bucks, it could...

fund 100 research grants that may result in the cure of this dreaded disease.

Ways to make it better...

all their hard work had already led to a cure.

In my opinion, the biggest challenges facing this organization are...

lack of awareness about the disease and lack of funding for research that will ultimately lead to a cure.

One thing I'd also say is that...

Mary Hesdorffer, the medical liaison for the Meso Foundation, is truly an angel. She has literally changed lives in so many ways and we all love her!

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

My diagnosis of mesothelioma was a shocker. Trolling the internet for information turned up MARF--a source not only of information but also of hope. Even though I had been to a major cancer center for a second opinion, I had been offered nothing but symptom treatment. MARF showed me the way to one of the few medical centers that actually treat mesothelioma. The staff has been extraordinarily supportive and the organization's work continues to offer hope.

The Great!

I've personally experienced the results of this organization in...

the chat line where patients and caregivers share to an extraordinary degree.

Ways to make it better...

If I had to make changes to this organization, I would...

do just what it is doing: provide support and counsel; beat the drums for a ban on asbestos in the USA; keep up the call for research funds into treatment and cure of this disease.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

support, validation, quick response to questions and concerns.

The kinds of staff and volunteers that I met were...

the entire staff -- the medical professional who provides information, the lawyer who works to raise funds, the people who steer advocacy issues, the webdesigner. Everyone.

If this organization had 10 million bucks, it could...

fund more research and generate more interest among researchers.

Ways to make it better...

MARF had the money to fund significant research on this disease.

In my opinion, the biggest challenges facing this organization are...

the mysterious reasons why asbestos is not yet banned in this country. Why?

One thing I'd also say is that...

without MARF, I would have had no hope of a future.

When was your last experience with this nonprofit?

2009

July 22, 2009

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July 22, 2009

This is a great foundation with purpose. It has helped many families that are going through an unbelievably tough time. Trying to provide answers, where there are none. Trying to provide solutions, where they are needed. They have played a very influential role in members of my families lives. We all appreciate everything they have done.

The Great!

I've personally experienced the results of this organization in...

My family. They were there for my uncle and his family as he battled Meso.

Ways to make it better...

If I had to make changes to this organization, I would...

Stay the course.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

They have tried there best to help all that are influenced by this disease.

The kinds of staff and volunteers that I met were...

Kind and had big hearts.

If this organization had 10 million bucks, it could...

Ask for more. I'm sure it would help all parties involved, but it will take more than that to reach the true goal. A cure!

Ways to make it better...

Nothing could make the experience better.

In my opinion, the biggest challenges facing this organization are...

Lack of government help. The politics involved in trying to save lives, are overwhelming.

One thing I'd also say is that...

My family is better off because of this organization. My uncle may not have survived, but his journey was improved thanks to them.

When was your last experience with this nonprofit?

2009

July 21, 2009

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July 21, 2009

The Mesothelioma Applied Research Foundation is a remarkable non-profit organization that truly helps and cares about patients and care-givers. My mother was diagnosed with pleural meso about a year ago and we have found so many resources and information from MARF. We have utilized the resident nurse, Mary Herdorffer, with her plethora of information on doctors, medicinal information, and overall treatment options. She is available via phone or email basically every day of the week for patients to access for questions or data. My father and I attended the International Mesothelioma Symposium, which MARF has organized for the past few years, in Washington D.C. and received so much information, contacts, and feeling of hope! We were able to travel to Capitol Hill and voice our stories and ask for help with research funding, awareness, and support in banning asbestos legislation to our state's representatives. We learned valuable information from the top researchers and doctors from around the world who focus on this disease. I plan to attend this Symposium year after year, and I vow to stay involved with the foundation because it creates hope for a cure for this terrible disease. It funds research grants, is in the process of making September 26 a Mesothelioma Awareness Day nation-wide, and helps thousands of people.

The Great!

I've personally experienced the results of this organization in...

Research grant funding and building awareness of this disease throughout the world.

Ways to make it better...

If I had to make changes to this organization, I would...

Find ways to spread awareness even more, especially on the fact that asbestos is not banned in the United States.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The contacts we have created and the feeling of community.

The kinds of staff and volunteers that I met were...

Amazingly kind, generous of their time, and well-organized. Very knowledgeable or would take the time to find answers if need be.

If this organization had 10 million bucks, it could...

Find a cure! There are so many researchers and doctors who have proposed ideas on how to help patients, but the organization has limits on how many it can fund do to its own resources.

Ways to make it better...

Not applicable

In my opinion, the biggest challenges facing this organization are...

Getting the word spread about this rare disease and its causes. Also, creating awareness for doctors about this disease and the treatment options, because there are very few experts in this disease.

One thing I'd also say is that...

Mesothelioma patients need help! They are suffering and the median survival rate is tragically low at about 12 months. My mother has been in constant treatment for over a year, and she wants to LIVE! She needs better treatment options now!

When was your last experience with this nonprofit?

2009

July 19, 2009

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July 19, 2009

I attended the Mesothelioma Applied Research Foundations Symposium in Washington DC in June 2009. I was impressed by the dedication of all involved. The Symposium was for patients, caregivers, doctors and researchers. Whatever the persons involvement, they were there with their whole heart. I was surprised to see so many people who have lost loved ones to Mesothelioma still so involved in the Foundation. It speaks alot to their dedication to finding a cure for meso. I was there as a volunteer and I know I will continue to help the Foundation in their fight to help ban asbestos and help to fund research to find a cure.

The Great!

I've personally experienced the results of this organization in...

patients recieving the correct medical attention from a specialist in Mesothelioma. Great strides in research from grants from the Foundation.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the total involvement of the staff, patients, doctors and researchers.

The kinds of staff and volunteers that I met were...

caring and helpful.

If this organization had 10 million bucks, it could...

help find a cure for mesothelioma.

When was your last experience with this nonprofit?

2009

July 18, 2009

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July 18, 2009

The doctors told my family that my father had about 6 months to live, and that he should get his affairs in order. When it seemed like all hope was shattered, I stumbled upon the Mesothelioma Applied Research Foundation. Their supportive staff helped my family to find specialists, learn about clinical trials, connect with others battling this cancer, and most importantly this foundation gave us hope.

The Great!

I've personally experienced the results of this organization in...

the eyes of my father. When the doctor gave my dad a 6-month death sentence, his hopes and dreams were shattered. However, when the Mesothelioma Applied Research Foundation connected my father with survivors, he was able to live again:)

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When was your last experience with this nonprofit?

2009

July 17, 2009

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July 17, 2009

The Mesothelioma Applied Research Foundation is THE source for mesothelioma awareness, medical guidance and other support for anyone impacted by mesothelioma. Mesothelioma awareness and research for better treatments and a cure are desperately needed, and only MARF can meet these needs. MARF is also attempting to establish September 26 as an annual Mesothelioma Awareness Day and assists individuals who are working with their state legislators for state recognition of this date. My 39-year-old son died of mesothelioma in 2006, and MARF continues wto support me and my efforts to promote mesothelioma awareness in his memory.

The Great!

I've personally experienced the results of this organization in...

providing information and medical advice and guidance not available elsewhere.

More feedback...

When was your last experience with this nonprofit?

2009

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